Women who suffer from the chronic-pain condition vulvodynia often feel isolated from their partners. But a better medical understanding is helping.
By Ashley Fetters
In her 18 years as a sex therapist in Orange County, California, Stephanie Buehler has come to recognize a certain tense, fraught dynamic in couples when a female partner has vulvodynia. The chronic-pain condition affects female genitalia, sometimes manifesting itself in generalized pain throughout the vulva and sometimes in localized pain that can be provoked through vaginal penetration. Either way, vulvodynia can make sex extremely painful.
Often, “these couples have stopped having any kind of physical contact. Usually they’ve stopped being affectionate,” Buehler told me. Particularly in mixed-sex couples, she’s found that “sometimes it’s because the woman is afraid that if there’s any physical contact, he’s going to get aroused and she’s going to have to say, ‘I’m not interested.’ Or it’s because he doesn’t want to burden her with his needs.” Not every couple whose love life has been affected by vulvodynia fits that description, Buehler noted: “Sex is not the be-all, end-all for every couple.” But many, she’s found, are frustrated by the loss of a way to communicate their love to each other. Sometimes a partner, especially a male partner, feels rejected, believing the female partner is exaggerating the pain she feels during sex as a way to brush him off. Sometimes the female partner feels guilt or frustration because she feels she isn’t able to fulfill her role in the sexual partnership. Some couples feel mutually resentful of their partner’s apparent failure to meet or understand their needs.
For more than a century, pain during penetrative sex was murkily understood and often presumed to be a physical manifestation of women’s dislike of or anxiety toward sex. Today, as Buehler puts it, it’s less common for people to have to visit 10 different doctors to finally get a diagnosis, but it’s still likely they’d have to see three. The Mayo Clinic explicitly states that doctors still don’t know what causes the condition, and the American College of Obstetricians and Gynecologists calls it a “diagnosis of exclusion.”
Still, researchers and physicians have made significant strides in understanding and effectively treating what’s now recognized as a real and common physical condition. In the process, they’ve helped many couples find hope in a situation that not so long ago felt hopeless.
Vulvodynia can affect more than just a person’s sex life (using tampons, getting pelvic exams, riding bicycles, and even wearing tight-fitting pants can cause pain), and any chronic condition can take its toll on a marriage or relationship. But not many chronic-pain conditions affect relationships in quite as direct and obvious a way as vulvodynia does.
When Buehler meets one of these couples, she first works with them on integrating some forms of affection back into their lives—kissing hello and goodbye at the start and end of the workday, sitting together on the couch, holding hands as they walk to their car. She works with them on how to talk about their feelings toward sex, separating their feelings about sex from their feelings about each other, and she works with them on how to engage sexually in ways that don’t involve penetration. Buehler also puts women in touch with pelvic-floor physical therapists or physicians who can treat the parts of the vulva that experience burning or stabbing sensations through massage, biofeedback therapy, injection of Botox, or surgery. (Frequently, she said, a male partner’s suspicion that his wife or girlfriend is exaggerating her pain level dissolves once he’s observed a physical-therapy session or two.)
After physical therapy, counseling, treatment, or some combination thereof, Buehler said many of the couples she works with are able to enjoy pain-free sex; all at the very least learn new strategies for how to manage the pain and/or maintain intimacy. Many couples leave “feeling like, Wow, we got through something together, and we’ve grown closer because of it,” Buehler said.
Female pain during sex has a long history of being misclassified, misunderstood, and blamed on the women themselves. As Maya Dusenbery writes in Doing Harm, a book about sexism in medicine, vulvar pain was first described in medical texts in the late 19th and early 20th centuries as a sort of recurring but mysterious phenomenon, a pain with no known cause.
Throughout much of the 20th century, however, the burning or stabbing sensation many women reported was considered “more of a marital problem than a medical one,” as Dusenbery puts it. Vulvar pain, which often shows up in tandem with vaginismus (a condition involving spasms of the pelvic-floor muscles that can make it painful or impossible to have intercourse), was frequently believed to be a physical manifestation of unhappiness in a relationship, and thus methods for treatment included things like hypnosis, couples therapy, and numbing ointments—the last of which often made sex possible, though not necessarily enjoyable.
But even in the 1970s and 1980s, after feminist activism had more firmly embedded female sexual pleasure into the conversation about sexual health, vulvar pain—now beginning to be called vulvodynia—was still widely considered to be linked to psychiatric or psychological problems. “Inexplicable pain in a woman’s genital area that often interfered with sex? The symbolism proved too tempting to resist, and pseudo-Freudian theories ran rampant,” Dusenbery writes. As a result, many women who suffered from pain provoked by sex and other genital touching were told that they were simply frigid or uptight, or that they just needed to relax.
It wasn’t until the 2000s that researchers came to recognize vulvodynia as a chronic-pain condition rather than a sexual dysfunction—and that was largely thanks to the efforts of a group of women living with vulvodynia who lobbied for more research funding. Phyllis Mate co-founded the National Vulvodynia Association in 1994, and today she serves as the president of its board. Within a few years of the NVA’s founding, she told me, the organization had successfully lobbied the National Institutes of Health to hold a conference on vulvodynia. “That did a lot to legitimize the disorder,” she said. “If you were a doctor, it was like, If the NIH is interested in it, it must be real.” In the years since, and especially in the 2010s, she added, public awareness and medical understanding of vulvodynia have improved significantly.
The new attention to vulvodynia also revealed just how common the condition is. Research conducted in the mid-2010s suggested that some 8 percent of women were currently experiencing vulvodynia symptoms; a 2012 study found that an additional 17 percent of women reported having symptoms in the past. One 2007 study found that a quarter of women with chronic vulvar pain reported an “adverse effect on their lifestyle,” while 45 percent reported adverse effects on their sex lives.
Of course, heightened awareness doesn’t mean universal awareness. A 2014 study found that more than half of women who reported experiencing chronic vulvodynia symptoms had sought care, but received no diagnosis. As Dusenbery points out in Doing Harm, research conducted in the mid-2000s found that one-third of women with vulvodynia considered the most unhelpful care they had received to be from doctors who had explained that their physical pain was “psychological” or “all in their head.”
When Haylie Swenson, a 33-year-old writer and educator who wrote earlier this year for the blog Cup of Jo about her experience with vulvodynia, got married 10 years ago, she had never had penetrative intercourse, but because she’d experienced vulvar pain in other situations, she worried she’d never be able to have sex without pain. Swenson’s fears were confirmed on her honeymoon in Paris, and upon returning home, she started calling doctors.
The first, she recalled, told her to “use lube, make sure you’re warmed up, and have a glass of wine.” Which was terrible advice, Swenson added, and not just because Swenson was a Mormon at the time and didn’t drink. The problem wasn’t the amount of lube or foreplay, she insisted; the doctor wasn’t listening. “I felt gaslit,” she told me.
Eventually, Swenson managed to get a diagnosis, but the next two years—the first two years of her marriage—were punctuated by doctors offering new treatments and those treatments failing to solve the problem, and by Swenson’s hopes rising and crashing accordingly.
In July 2018, Allison Behringer told the story of her own experience with vulvodynia on the first episode of Bodies, the documentary podcast on medical mysteries that she hosts. In the episode, titled “Sex Hurts,” Behringer tells a story that begins when she was 24: She met a man, fell in love, and enjoyed a loving, rewarding sex life with him until one day, on vacation (also in Paris), she experienced a mysterious sharp pain during sex. The relationship intensified, but so did the pain, and as Behringer searched for a remedy, her partner became more and more frustrated by her inability to have penetrative sex with him.
In the end, with treatment and physical therapy, Behringer’s pain subsided. But soon afterward, the relationship dissolved. Behringer and her ex had started to fight about a lot of things, even after the sex got better. But “in the inevitable post-relationship ‘what went wrong’ analysis that we all torture ourselves with,” she said in the episode, “I’ve wondered so many times how things would have turned out if it weren’t for the pain.”
In the year and a half since “Sex Hurts” was released, Behringer said she has been contacted by “somewhere between 50 and 100” women—via email, Facebook message, and LinkedIn—who got in touch to tell her their own strikingly similar stories. Not only do their long, discouraging searches for care sound a lot like Behringer’s, but so do their stories of relationships that suffered or crumbled entirely as a result. “A lot of people are like, ‘My partner was really unsupportive. My partner sounds like he was just like your partner,’” she told me in an interview.
Despite the strides researchers have made in recent years toward understanding vulvodynia, living with it can still be a profoundly isolating experience. It can be like having all the frustrating everyday complications of any other chronic condition plus the added hardship of being shut off from one important and primal way to feel close to a partner. (Of course, other kinds of sexual expression are in many cases still possible, but penetration is often considered an important or primary objective of heterosexual sex.)
Recent research has found, however, that how partners respond can greatly affect the relationship quality of couples affected by vulvodynia. For instance, researchers have found that “facilitative” behaviors from male partners (things like showing affection and encouraging other kinds of sexual behaviors) lead to better sexual and relationship satisfaction than “solicitous” behaviors (like suggesting a halt to all sexual activity) or angry behaviors. Many studies have linked localized (or “provoked”) vulvodynia to decreased sexual satisfaction, but not necessarily to decreased relationship quality, and other research has suggested that even the intensity of the pain women report can be affected by partner responses.
Swenson, who describes herself in her blog post as “the higher-desire spouse” in her marriage, said she and her husband found other ways to enjoy sexual pleasure that didn’t involve penetration. “I think it’s sort of damaging, the way that people hold up penile intercourse as, like, the be-all, end-all,” she told me. Still, the limitation of their sex life, she said—the knowledge that “we didn’t have this one thing”—was frustrating. “It made me feel sad,” she said, “and it sucks when sex makes you sad.”
While Swenson’s husband shared her sadness and frustration, she remembers feeling alone in her search for a remedy: “It was my body, my vagina, that I had to take to all these strangers,” she said. “It was my story that I had to tell over and over. It was my struggle to be believed and be taken seriously.”
Swenson eventually underwent surgery for her vulvodynia. (In cases like Swenson’s, where other treatments have failed, doctors often recommend removing the painful tissue.) After a two-month recovery and an all-clear from her doctor, she and her husband had penetrative sex for the first time. It didn’t hurt, Swenson told me, and afterward, she cried.
“When intercourse got easier, everything got a little easier,” she said. Still, “it took a long time to untangle those knots,” she added. “It was just this fraught, tangled thing, representing so many emotions. Anger, and regret, and this sort of feminist rage I had toward the medical-industrial complex that didn’t care—all of that got tangled up in my sex life.”
Perhaps the most important aspect of vulvodynia that the flurry of recent research has revealed is its prevalence: It’s newly apparent that thousands of women, along with their partners, have quietly faced agonizing challenges like Swenson’s and Behringer’s. But while the outlook for these couples a generation ago would likely have been bleak, today help, and hope, are possible.
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